The Center for the Testing, Treatment and Clinical Research for Abetalipoproteinemia:
This is an exciting partnership between Cincinnati Children’s Hospital and ACF to offer the first multi-disciplinary center dedicated to the testing and treatment of patients with Abetalipoproteinemia. The Center is scheduled to open in late 2007 / early 2008.
The Center will have a patient care coordinator who will be instrumental in assisting patients and their families:
- Schedule appointments
- Investigate medical insurance issues
- Track lab results
- Schedule and track recommended medical studies
- Coordinate follow-up
Since Abetalipoproteinemia is a rare condition, it is difficult to find physicians who know about the treatment and management issues. This center will fill a need for families and patients with Abetalipoproteinemia by having pediatric specialists in these areas:
- Gastroenterology
- Genetics
- Neurology
- Ophthalmology
- Nutrition
Since The Center will see more individuals with Abetalipoproteinemia then any other center in the world, they will be able to gather information in clinical research to help make advances in the treatment of the condition. This data will be published and made available to anyone who needs it.
We hope that there will be funding available to assist with travel costs for those families who demonstrate a financial need.
Initially, the Center will only be seeing pediatric patients. Once the Center is more established, it will be able to expand and begin seeing adult patients.
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